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AVM Survivors Network

AVF 2 yrs post surgery

From my 2017 Post - neurosurgeon had the results of the angiogram and discussed with me. He said that the left artery at the back of my head had a hole in it and the vein connected directly into it and was pulling blood from the left artery as well as the right Endovascular section of Lower VV fistula. which I think means its an AVF.
I was tested in office for Steal syndrome and don’t have it.

Today I am doing well. I worry about the long term affects of the artery being closed off completely. I have a picture from my dentists office this month that shows the coils. They were stumped as to what was on the xray, they had never seen before. It was interesting to finally see what was done, I was surprised by how large it is - on the right side of xray. Its actually opposite bc its a left avf. Almost the size of my finger. What are the implications long term, what pain and suffering awaits…

Dental%20xray%20-%20coils

Hi

Its a question for a neuro surgeon or neurologist but if it is all closed properly, it should last a lifetime, as far as I know.

Much of our circulatory system has two sides – left and right – so if you have a completely closed left vertebral artery, the right vertebral artery does the job of supplying the blood and oxygen and nutrients, in the same way that a person with one deformed kidney can run perfectly well on that one kidney. What you’ve lost, perhaps is some “resilience” in your circuitry, that if you were ever to have an issue with the other side, it would be more of a concern. However, I know one of my friends has only one operating kidney and advice re that was that most people never know that one is not missing… they get through life just fine with only one side working. Same as an aircraft with two engines, if one fails, the airplane is designed to fly ok with the remaining one. Same with us.

I do remember reading about VVAVFs when you first arrived and I remember reading that it is often the case that one side is “sacrificed” to remove the risk of rupture and that we can do fine with only one side working.

So… others may have good input to share but I believe it is just a matter of a loss of “resilience”.

Hope this helps,

Richard

When an AVF is treated, the portion that is embolized (with coils or embolic material/glue), is a lesion that isn’t supposed to be there to begin with. The diseased portion is what is blocked off or filled. If that is done properly, there is no consequence to the patient, and they are cured. You aren’t losing anything, or nothing should be affected long term. If you are doing fine now, you should continue to.

@tacos4life

I agree with everything you say but I remember Catherine going into surgery last year and I think the surgeon ended up “sacrificing” one of her vertebral arteries (i.e. having to glue that up as well as the fistula, the connection to the vein). When I had my DAVF treated, my interventional radiologist said he would try to avoid doing so, but he might have to sacrifice my right transverse sinus. I think I got away with my TVS intact but I seem to remember Catherine lost one side in op, so her natural concern is whether that would have any long-term effects.

Hope you are doing well… and in general I agree with everything you said!

Best regards,

Richard

Newer procedures with more skilled surgeons do not need to sacrifice the vein any longer. That’s how mine was done and the vein was spared. As far as the arteries, I don’t believe they artery is lost, just the connection to the vein and the fistula. The healthy portion is usually left intact. Usually when that happens to an artery it’s unintended, and leaves some nerve damage or disability. Admittedly though, I don’t know Catherine’s scenario or her initial outcome. They all vary a great deal.

I had Gamma knife surgery in April of 2015. All was fine until around September of 2018 I started getting bad headaches, every day. After months I went to a local hospital in the end of January and was flown to a trauma center in DC. Then I was transferred to the hospital that did the gamma knife surgery. I was in and out of the hospital 5 times with an aneurysm and given tons of mega dose I.V. steroids, they didn’t work. I was told without the brain surgery I wouldn’t be ‘normal’ again and with the surgery I might lose my speech, mobility, and/or memories. my wife and I decided to get the surgery because I couldn’t walk, talk, every time I stood up, I passed out, I couldn’t live like that. A few weeks after the surgery I returned to work after being out for 6 months, I am a walking miracle. I am back to 99% of what I was before the AVM in 2015. All of this was caused by the AVM cluster, I am so glad my neurosurgeon found the AVM.